Chapter 11: Symptom control and care towards the end of life
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Clinical governance
Marriages at the end of life
Patients whose illnesses are terminal often reflect on the meaning of their lives (Stanley and Hurst [143]). This can often involve deepening connections with loved ones, planning financially and completing personal goals (Arthur et al. [5], Seaman et al. [135]). On occasion, critically or terminally ill patients may request support in arranging a marriage or civil partnership. For those patients who are deemed too ill to move to a venue licensed for marriage (such as a registry office), the ceremony can take place at the bedside in an establishment where they are being cared for, such as a hospital or hospice.
Where people wish to marry in hospital, a Registrar General's Licence must be obtained in order for the marriage to be performed. The intended spouse or partner of the patient must give notice of the marriage or civil partnership personally to the superintendent registrar at the local Registry Office. In all circumstances, the registrar will require a letter signed by the registered medical practitioner stating that the patient is too ill to be moved and is not expected to recover. The letter should also confirm that the patient has capacity and understands the nature and purpose of the marriage or civil partnership ceremony. The registrar will also need a letter giving permission for the marriage or civil partnership to take place on hospital grounds. Most hospitals will have existing templates that they use for such occasions. There is no fixed waiting period for a Registrar General's Licence. Once the licence has been granted, the ceremony may take place at any hour of the day or night, within a month of the notice being taken (Marriage (Registrar General's Licence) Act [89]).
From a legal perspective, the following are necessary for a marriage or civil partnership to go ahead:
- proof of name (e.g. valid passport)
- proof of age (e.g. birth certificate)
- proof of nationality (e.g. valid passport or national identity card)
- proof of address (e.g. valid driving licence or recent utility bill)
- decree absolute or final order (if applicable)
- death certificate of the former partner (if applicable)
- entry visa (if applicable)
- details of where and when the individuals intend to get married.
Last will and testament
A patient may wish to make a will in hospital, and some patients will not be able to complete this process independently. Healthcare staff must ensure that a doctor has reviewed the patient to assess that they have capacity to make decisions (Mental Capacity Act [93]) and ensure this is recorded in the patient's medical notes.
Where possible, wills should be drawn up professionally and patients should be encouraged to seek the assistance of a solicitor, particularly if there are complex property or financial matters. Nurses may be approached to witness a will; the Royal College of Nursing ([123]) states that although there is nothing in law preventing a nurse from witnessing a will, it is not advisable for nurses to sign legal documents as this could lead to involvement in legal cases should there be a later dispute. This advice is endorsed by the Nursing and Midwifery Council, which reminds nurses of the importance of maintaining clear professional boundaries and being impartial at all times (NMC [112]). All healthcare professionals should consult their hospital's local policy relating to the signing of last wills or any other legal documents.
Euthanasia and assisted suicide
Euthanasia is the act of deliberately, by act or omission, ending a person's life to relieve suffering. Assisted suicide is the act of deliberately assisting or encouraging another person to die by suicide (or attempt to do so). If the relative of a person with a terminal illness were to obtain powerful sedatives knowing that the person intended to take an overdose of sedatives to kill themselves, the relative would be assisting suicide (DH [38]).
Both euthanasia and assisted suicide are illegal in the UK (Suicide Act [146]), and euthanasia carries a maximum penalty of life imprisonment. There are campaigns ongoing to change the law, and since 2003 there have been over 10 attempts to legalize assisted suicide (Care n.d.). Nurses must not participate in either process. However, they should be aware that those patients who approach healthcare professionals with a request for assisted suicide or euthanasia will be doing so from a position of significant vulnerability and must be treated with respect, care and compassion. Commonly, these requests stem from a fear of pain, indignity and dependence, and it is imperative to ensure that patients are offered adequate opportunities to express these fears (Dowler [41]) and that they are reassured as much as possible. Nurses have a duty of care to ensure that patients’ concerns are communicated to the multidisciplinary team in order that the appropriate specialist physical, psychosocial and spiritual support is offered to minimize their distress.
Artificial hydration
In the last few days to weeks of life, anorexia, weight loss and swallowing difficulties are common (Lacey [77]). Reduced oral intake can be hard for the family to accept and it is not uncommon for them to request artificial hydration and/or feeding via enteral or
parenteral routes. It is always important to discuss the risks versus benefits of these measures with the patient and their family (Lacey [77]). Signs of dehydration should be assessed regularly (at least 12‐hourly) and regular mouth care should be offered to keep the patient's mouth and lips moist. People who do want to drink should be given help to carry on drinking if they can still swallow safely; assessment of their ability to swallow should be performed regularly as difficulties in swallowing and dysphasia can occur towards the end of life (Lacey [77]).
For some patients it may be necessary to consider artificial hydration. The decision around hydration needs to be in line with discussions regarding ceilings of care and potential benefits and risks addressed with the patient and family (Lanz et al. [79]). There is some evidence to suggest that dehydration can cause patients to experience increased symptoms, such as confusion and restlessness in patients who are not in the final stages of life; however, these are issues that can also be experienced by patients who are dying (Fritzson et al. [51]). Providing artificial hydration at the end of life may have no benefit for symptoms; one study recognized that there was no difference in hydration after 7 days between patients with advanced cancer who were given 1 L per day versus 100 mL per day (Bruera et al. [17]). Risks of overhydration include increasing shortness of breath and fluid retention. This study also suggests that patients who receive more than 1 L of fluid in 24 hours may have increased bronchial secretions in the last 48 hours of life compared to patients who receive less artificial hydration. It is important to view the evidence on this subject with a critical eye, being careful to interpret any findings. Currently, there is insufficient high‐quality evidence to say categorically that in the palliative care setting fluids improve symptomatology (Lanz et al. [79]); however, it is of paramount importance to ensure individualized care of the patient and support for their family, and to engage in conversations regarding the use of fluids.
The preferred route for the administration of fluids in patients at the end of life is often subcutaneously; in this way, 1.0–1.5 L of normal saline can be delivered over 24 hours (Dalal et al. [33]). The use of permanent access devices that are already in place may be suitable for the delivery of fluid intravenously. Absorption has been found to be as effective when fluid is delivered subcutaneously as when it is delivered intravenously (Vidal et al. [159]).